In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for pediatric institutional ethics committees (IECs). The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations.
A convenience sample of ethics points of contact from Children’s Hospital Association membership were invited to complete an electronic survey on their ethics programs and practices in spring 2022. Nineteen survey questions were preidentified as reflecting measures specific to best practice standards previously published by the AAP. This subset of questions was analyzed using frequencies and categorized to assess for adherence to the AAP IEC policy recommendations.
A total of 117 out of 181 surveys were completed (65%). Stark IEC practice gaps include: lack of diversity of membership, training needs to maintain members’ competencies, quality improvement within the organization, and scope of ethics service. Over one-quarter of IECs do not have a systematic way of informing hospital staff about ethics consultancy services and how to place an ethics consult. Nineteen percent of responding IEC services do not inform patients or families about the existence of ethics consult services. One-third of responding children’s hospitals do not provide resources for the IECs to engage in ethics education at the facility.
IECs in children’s hospitals are not consistently abiding by operational recommendations. Next steps should include assessment of recommendation barriers and enablers with a goal of enhancing strong practices across IECs in children’s hospitals.
Pediatric institutional ethics committees (IECs) are an essential resource as they provide supportive ethics-related guidance.1 In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for IECs (Table 1).2 These recommendations serve as the authoritative source of pediatric-specific guidance for the field. Adherence to practice standards and recommendations may reflect quality within health care systems.3
AAP IEC Recommendation and Correlating Survey Result
| AAP Recommendation . | Survey Question . | Results . |
|---|---|---|
| Recommendation 1: an IEC should have responsibility within an institution for oversight of clinical ethics consultation, Recommendation 1 (cont’d): …review of policies relevant to ethical issues in patient care, | The scope of the pediatric ethics program includes oversight of the following: | Clinical ethics = 40% |
| Does the ethics program have responsibility within the institution for review of policies relevant to ethical issues in patient care?a | Leads development of new policies and reviews of existing policies = 14%; assists others leading development of new policies and reviews of existing policies = 27%; leads and also assists other in leading development of policies = 49%; not involved in policy work = 10% | |
| Recommendation 1 (cont’d): …and education of professional, administrative, and support staff about ethical issues, regardless of whether these functions are delegated to other subcommittees or programs. | What resources for ethics education exist at your institution?a | None = 33%; an ethics training program = 19%; an ethics academic conference = 16%; an ethics education series = 38% |
| Recommendation 2: institutional policies and procedures for review of ethics concerns should be included in staff training; | When are hospital staff informed of ethics program functions and how to place an ethics consult? | At new staff orientation = 37%; annually (or more often) through required staff training = 7%; both at new staff orientation and annually (or more often) through required staff training = 33%; hospital staff are not systematically informed = 27% |
| Recommendation 2 (cont’d): …information on how to raise ethics concerns should be available to patients, families, and staff. | How are patients and patient families informed of the existence of the ethics consultation service? [check all that apply] | Written materials given routinely at time of admission = 30%; written materials available upon request = 29%; posters in public areas of the hospital = 11%; information on public Web site = 46%; available via a call to the Hospital Operator = 38%; not informed = 19% |
| Does your hospital’s formal guidance document outline the process to notify a patient or family that an ethics consult has been requested? | Yes = 23% | |
| Who requests the ethics consultations [frequency of patient or family as requester]? | 6% out of the settings that allow for patient and family placement of consults; note that 21% of respondent said patients and families do not initiate consults in their setting | |
| Recommendation 3: an IEC may play an important role, along with institutional administration, in organizational ethics | The scope of the pediatric ethics program includes the following: [select all that apply] | Organizational ethics = 40% |
| Recommendation 3 (cont’d): and quality improvement. | What disciplines or roles are represented as pediatric ethics consultants? Please select all that apply. | Researcher and/or quality improvement developer = 2% |
| Recommendation 4: membership on an IEC should be diverse and reflect different perspectives within the hospital and general community. | Are the ethics consultants representative of the work force in the following domains? [gender, race and ethnicity, religion] | Gender: no = 5%; race and ethnicity no = 34%; religion no = 22% |
| Do the ethics consultants in your care setting represent the patient population served in terms of racial or ethnic diversity? | No = 65% | |
| What initiatives are in place to increase the diversity of ethics consultants? | None = 67% | |
| Are mechanisms consistently in place to ensure the ethics process includes an open range of viewpoints, opinions, and perspectives (strategic avoidance of groupthink)? | No = 30% | |
| The scope of the pediatric ethics program includes the following: [select all that apply] | Community outreach = 13%; | |
| Who may be asked to help address an ethical concern when it arises? [select all that apply] | Community member (individual(s) not employed by hospital) = 32% | |
| Recommendation 5: an IEC that is engaged in clinical ethics consultations should have clearly articulated policies and procedures that conform to ethical principles of fairness and confidentiality. | Presence of a policy [note: did not specifically inquire about fairness or confidentiality as content] | Policy presence = 75% |
| Recommendation 6: an IEC should establish continuing education and training programs that ensure that IEC members attain and maintain the competencies required to perform their specific duties within the IEC. | What continuing education and training programs are required annually for ethics consultants? | None = 77%; general CME hours (didactics, staff development, case reviews, etc) = 12%; CME hours specific to ethics = 11%; range 2–40 h required annually; average 13.6 h and median 10 h |
| Recommendation 7: Independent ethics committees within a single institution should be dissolved or restructured to report to the larger IEC. | Did not inquire on survey. | NA |
| Recommendation 8: IECs within a general hospital setting should ensure an adequate degree of multidisciplinary expertise for addressing ethical issues specific to pediatrics. | Who provides ethics consultations for your pediatric patients? | General ethics consultants (also covering adult hospital- or health-system) = 49%; pediatric-specific ethics consultants = 51% |
| What disciplines or roles are represented as pediatric ethics consultants? | Pediatrician 75%; nursing 68%; social work 57%; chaplaincy 51%; administration 32%; legal 30%; trainee 27%’ risk management 17%; patient advocate 15%; philosopher 7%; mediator 6%; human resources 3%; compliance officer 2% |
| AAP Recommendation . | Survey Question . | Results . |
|---|---|---|
| Recommendation 1: an IEC should have responsibility within an institution for oversight of clinical ethics consultation, Recommendation 1 (cont’d): …review of policies relevant to ethical issues in patient care, | The scope of the pediatric ethics program includes oversight of the following: | Clinical ethics = 40% |
| Does the ethics program have responsibility within the institution for review of policies relevant to ethical issues in patient care?a | Leads development of new policies and reviews of existing policies = 14%; assists others leading development of new policies and reviews of existing policies = 27%; leads and also assists other in leading development of policies = 49%; not involved in policy work = 10% | |
| Recommendation 1 (cont’d): …and education of professional, administrative, and support staff about ethical issues, regardless of whether these functions are delegated to other subcommittees or programs. | What resources for ethics education exist at your institution?a | None = 33%; an ethics training program = 19%; an ethics academic conference = 16%; an ethics education series = 38% |
| Recommendation 2: institutional policies and procedures for review of ethics concerns should be included in staff training; | When are hospital staff informed of ethics program functions and how to place an ethics consult? | At new staff orientation = 37%; annually (or more often) through required staff training = 7%; both at new staff orientation and annually (or more often) through required staff training = 33%; hospital staff are not systematically informed = 27% |
| Recommendation 2 (cont’d): …information on how to raise ethics concerns should be available to patients, families, and staff. | How are patients and patient families informed of the existence of the ethics consultation service? [check all that apply] | Written materials given routinely at time of admission = 30%; written materials available upon request = 29%; posters in public areas of the hospital = 11%; information on public Web site = 46%; available via a call to the Hospital Operator = 38%; not informed = 19% |
| Does your hospital’s formal guidance document outline the process to notify a patient or family that an ethics consult has been requested? | Yes = 23% | |
| Who requests the ethics consultations [frequency of patient or family as requester]? | 6% out of the settings that allow for patient and family placement of consults; note that 21% of respondent said patients and families do not initiate consults in their setting | |
| Recommendation 3: an IEC may play an important role, along with institutional administration, in organizational ethics | The scope of the pediatric ethics program includes the following: [select all that apply] | Organizational ethics = 40% |
| Recommendation 3 (cont’d): and quality improvement. | What disciplines or roles are represented as pediatric ethics consultants? Please select all that apply. | Researcher and/or quality improvement developer = 2% |
| Recommendation 4: membership on an IEC should be diverse and reflect different perspectives within the hospital and general community. | Are the ethics consultants representative of the work force in the following domains? [gender, race and ethnicity, religion] | Gender: no = 5%; race and ethnicity no = 34%; religion no = 22% |
| Do the ethics consultants in your care setting represent the patient population served in terms of racial or ethnic diversity? | No = 65% | |
| What initiatives are in place to increase the diversity of ethics consultants? | None = 67% | |
| Are mechanisms consistently in place to ensure the ethics process includes an open range of viewpoints, opinions, and perspectives (strategic avoidance of groupthink)? | No = 30% | |
| The scope of the pediatric ethics program includes the following: [select all that apply] | Community outreach = 13%; | |
| Who may be asked to help address an ethical concern when it arises? [select all that apply] | Community member (individual(s) not employed by hospital) = 32% | |
| Recommendation 5: an IEC that is engaged in clinical ethics consultations should have clearly articulated policies and procedures that conform to ethical principles of fairness and confidentiality. | Presence of a policy [note: did not specifically inquire about fairness or confidentiality as content] | Policy presence = 75% |
| Recommendation 6: an IEC should establish continuing education and training programs that ensure that IEC members attain and maintain the competencies required to perform their specific duties within the IEC. | What continuing education and training programs are required annually for ethics consultants? | None = 77%; general CME hours (didactics, staff development, case reviews, etc) = 12%; CME hours specific to ethics = 11%; range 2–40 h required annually; average 13.6 h and median 10 h |
| Recommendation 7: Independent ethics committees within a single institution should be dissolved or restructured to report to the larger IEC. | Did not inquire on survey. | NA |
| Recommendation 8: IECs within a general hospital setting should ensure an adequate degree of multidisciplinary expertise for addressing ethical issues specific to pediatrics. | Who provides ethics consultations for your pediatric patients? | General ethics consultants (also covering adult hospital- or health-system) = 49%; pediatric-specific ethics consultants = 51% |
| What disciplines or roles are represented as pediatric ethics consultants? | Pediatrician 75%; nursing 68%; social work 57%; chaplaincy 51%; administration 32%; legal 30%; trainee 27%’ risk management 17%; patient advocate 15%; philosopher 7%; mediator 6%; human resources 3%; compliance officer 2% |
NA, not applicable.
More than 1 response allowed.
Although the study team has previously published description of the prevalence, practice scope, accessibility, and consultation patterns among pediatric IECs4,5 ; the extent to which these core recommendations reflect the practices of pediatric IECs in the United States remain unknown. There is vast variability in IEC models in children’s hospitals in terms of team composition and professional preparation, consult topics and trends, and approach to addressing consults.4 The majority of health care ethics consults occurring in pediatric settings are completed by staff engaging in ethics as part of collateral duty without formal ethics training.4 Recognizing that the field of pediatric health care ethics is under-staffed and under-resourced compels the need to assess and evaluate for adherence to practice recommendation as a potential marker of current service quality.
Knowledge of successes and/or gaps in the application of practice standards in pediatric hospitals has potential to inform the field’s understanding of facilitators and barriers to their implementation. This assessment can then facilitate a re-examination of the existing recommendations for improved actionability and practice application. The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations.
Methods
This study included analysis of evaluative measures specific to the AAP IEP recommendations (Table 1) from the team’s previously-described national survey of pediatric IECs distributed in spring 2022.4 The survey was independently designed, piloted, revised, and repiloted by an interdisciplinary team (2 physicians, 2 social workers, 2 nurse scientists, 1 chaplain, and 1 mixed methodologist) before administration.
During an 8-month period (April to December 2021), the Children’s Hospital Association (CHA) surveyed all member children’s hospitals in the United States regarding the programs and patient care services offered during fiscal year 2020 (July 2020 to June 2021). The CHA Annual Benchmark Report was selected as the data source because of inclusion of children’s hospitals throughout the United States. CHA membership hospitals received electronic invitations to complete 1 Annual Benchmark Report per facility. Reminders were sent virtually until survey completion in 3-week intervals for 60 days. A link to the REDCap© survey was emailed to ethics consultant leaders identified by phone contact5 at 181 children’s hospitals, with the first page serving as participation consent. Only 1 response was accepted per children’s hospital. Data were analyzed using SAS Version 9.4 with frequencies reported for categorical variable responses. The study was determined to be exempt (IRB Protocol #22-019626).
Results
A total of 117 out of 181 surveys were completed (65%), with 104 identifying having an IEC. Completed surveys were from 45 states.
Scope of IEC Role
Although the recommendation is for IECs to maintain oversight over ethical issues in patient care as well as a role in organizational ethics, only 40% of IEC respondents reported that IEC provides oversight for pediatric ethics consults and instead delineated their role in context of regulations, policy, or compliance with delegation of consults to informal entities or not occurring. Only 40% of respondents included organizational ethics within their scope. Although the recommendation is for IEC engagement in policies relevant to ethical issues in care, 10% are not involved in policy work. Moreover, only 2% of respondents include a quality improvement representative on their IEC to address systems issues raised by ethics consultancy.
Staff Awareness and Education
Despite the recommendation to inform children’s hospital staff of the institutional policies and procedures for review of ethics concerns, more than a quarter (27%) indicated that hospital staff are not systematically informed about ways to raise ethics concerns. Ethics resource availability was also concerning, with only 38% reporting an ethics education series as a resource for staff, 19% providing ethics training programs, and 16% ethics academic conferences.
Patient and Family Awareness
Respondents use written materials provided routinely (30%) or upon request (29%) as well as posters (11%) and public websites (46%) to inform families about how to raise ethics concerns. However, 19% indicated that pediatric patients and their families are not informed about how to raise ethics concerns. One-quarter (23%) do not include guidance for informing patients or families of ethics consults in their IEC policy. Subsequently, only 6% of respondents conveyed that pediatric ethics consults are requested by patients or families with 21% not receiving ethics consults from patients or families.4
Diversity
Although the AAP IEC Policy recommends IEC membership should represent human and thought diversity, nearly two-thirds (65%) of IEC respondents felt as though their IEC did not represent the racial and ethnic diversity of the patient population served. Despite this lack of diversity, 67% do not have an initiative or plan to increase the IEC diversity and one-third (30%) do not have a mechanism in place to foster diversity of perspectives or viewpoints among IEC members.
IEC Membership Education and Pediatric Expertise
Despite the recommendation for continuing education for IEC competencies, three-fourths (77%) of respondents do not require any continuing education or training for IEC members. The AAP IEC Policy recommends multidisciplinary expertise specific to pediatrics. Although IECs bring interdisciplinary staff together, only half of consultants responsible for ethics consultations about children are pediatric-specific ethics consultants.
Discussion
Children’s hospital IECs are not consistently abiding by the AAP IEC Policy recommendations. Stark IEC practice gaps include lack of diversity of membership; informational access for patients, families, and staff; training needs to maintain members’ competencies; quality improvement within the organization; and scope of ethics service. The implications of these practice gaps may translate into decreased ethics reach, organizational risk, and diminished ethics quality.
One plausible explanation for many of these gaps, particularly regarding missing services requiring significant time and effort by the IEC, eg, outreach to families, maintaining competency of members, education for staff, and quality improvement efforts, are likely impacted by the limited funding available for ethics work in institutions.4 With an average FTE of 0.5 across pediatric hospitals and an increase in volume of consults in the last decade,4 most efforts by IECs are likely limited to the time-consuming work of responding to ethics consults. Without adequate funding for staff to meet current institutional needs for consultation, it is understandable that further outreach to clinicians and families would be a low priority.
Outreach programs to expand the diversity of the ethics workforce also requires mentorship and potentially investment of institutional resources to support staff of color in obtaining formal ethics training and certification for consultation. Although IEC’s may value the importance of diversity within their colleagues, under-represented minorities in medicine are also under-represented in clinical ethics and closing that gap will require a substantial commitment in both professional time and financial resources.
If limited institutional investment in ethics services may be an indicator for the value it is perceived to have in an institution, it may also be a potential explanation for the limited amount of organizational ethics efforts the IEC are invited to contribute to in an institution. Institutional leadership can choose to include their IEC, or not, depending on the added value it is able to bring to the issues they confront. This became very evident during the coronavirus disease 2019 crisis where ethicists were needed to address a variety of ethical concerns within their hospitals, including prioritization of care needs and the allocation of finite resources, the moral distress of clinicians, visitation policies, grieving patients and families at end-of-life, and ethical uncertainty, among other issues.6
Finally, it is possible, as was hypothesized in the adult literature,3 that there may be a lack of awareness of the AAP recommendations or a disagreement about the importance of some of these recommendations. Consensus statements like the AAP guidelines may not be convincing for some IECs given their limited resources. Further exploration into these gaps, their origin, and the ways to bridge them could result in improvements in healthcare ethics services and impact. Additionally, systematic approaches to quantify and describe the value of ethics consultation may be necessary to ensure institutions’ support of these efforts, with adequate resources for them to be performed with expertise. Further empirical work could explore which outcomes institutions would consider meaningful and how IECs could measure these outcomes for quality improvement efforts. In addition, given the many ethical concerns that clinicians face daily, it is troubling that more than a quarter are not informed on ways to raise their ethical concerns and have limited availability of in-service ethics educational series to ask questions and clarify their ethical concerns.7 Some data suggest that 23% of nurses, for example, have no ethics education and thus are less likely to have ethics confidence and take moral action in clinical care.7 In-house ethics education would be beneficial to those with and without this preparation. More data are needed to better understand the role of in-service IEC ethics education and its usefulness to staff, including increasing their level of confidence and competence in addressing ethical issues in patient care.
Limitations of this study include extrapolation of survey question content to align with the AAP 8 operational recommendations. However, the data provides a nuanced understanding of these recommendations. Future research is now needed to explore each of the recommendations in more detail and qualitative insights would be instructive to compare with the quantitative data. Survey research also risks potential recall bias, although framing the questions as a summary of current ethics practices may have countered this bias. Nonetheless, adherence to practice recommendations may correlate with the quality8 and support of clinical staff that patients and families received when faced with complex ethical issues. Urgent next steps should include assessment of recommendation barriers and enablers from all relevant stakeholders. Attention should be given to IEC structure and function to maximize ethics quality and the value that IECs bring to hospitals across the country.
Drs Weaver and Ulrich coconceptualized and codesigned the study and drafted the initial manuscript; Drs Moon and Walter coconceptualized and codesigned the study and reviewed and revised the manuscript for intellectual content; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Dr Ulrich is supported in part by the Agency for Healthcare Research and Quality under Award 1R01HS028427-01A1. Dr Walter was supported by the National Heart, Lung, And Blood Institute of the National Institutes of Health under Award K23HL141700. The funder did not participate in the work.
CONFLICT OF INTEREST DISCLOSURES: The authors have no conflicts of interest relevant to this article to disclose. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, Veterans Affairs, or the National Center for Ethics in Healthcare.
Comments